This may be long! Moms journey with mbc started in 2020 . At the time lung Mets . She started ibrance and femara which worked great untill it didn’t this summer 2023. The cancer had spread to bones and 2 small liver and lesion and tiny brain lesion . Which was been taken care of with radiation and has since had a another brain mri and it was good. She started anfintor and Faslodex and it didn’t work . She had scans last week . So now Xeloda. She said the cancer had found away around the using estrogen blockers . But she’s only ever been on femara which worked great for almost 3 years and she tried fasolodex for 7 weeks ? Is this normal protocol ??? The tumor markers that we have been following for 3 years on every scan that was in the chest. Completely disappeared on the most recent scan . They only shrunk on ibrance . 7 weeks on anfintor they were gone??? Now her oncologist said they may have not been cancer ???? She said maybe swollen lymph nodes or maybe she had mixed results on last treatment? But had liver progression so that’s why change in meds! It’s just a lot to take in. This is also a new oncologist who we like but when do you get a second opinion . I would just love advice if you have went through something similar. Thanks in advance
Xeloda : This may be long! Moms... - SHARE Metastatic ...
Xeloda
I’m on faslodex and Verzenio 100 mg for 5 years remission but for some reason I feel this pet will show something. This is all scary . I spread to my ribs only on the right side five years ago four years ago went into remission and it stayed there with scar tissue ever since didn’t spread anywhere else. I go every six months for a pet scan this time I skip the six months I’m going in January, which will be a year scared.
Pray you have a good scan🙏
Thanks praying for you .
That really is a lot to take in, and I haven't quite parsed it. I think I get what the oncologist is doing, and it does sound reasonable to me. Great the chest met(s) are gone. I have had that happen -- something on the lung that turned out to be nothing, not cancer, and disappeared.
Without taking a closer look at what is going on with your mother, I just want to say that the time for a second opinion is now. Some mbc websites advise getting one upon diagnosis. I waited until the second change in treatment. That was also a good time.
Has your mother had genomic testing? That can really help explain the resistance to estrogen blockers and suggest a treatment. The testing can be done with a blood biopsy.
Do you have to ask for the genomic testing ? Is it covered by insurance ?
One shouldn't have to ask, but I did. I asked for FoundationOne. My oncologist had forgotten that I hadn't had it! Sometimes our docs need prompting. It was covered by Medicare. I understand it can be very expensive. Others here have had it, and other genetic tests, and can advise on insurance if you are not in the US and your mother isn't on Medicare.
I read Fiercefighter's response to you -- I read it at a moment when I had been explaining my treatment to someone who just knows chemo for cancer. I was saying it is kind of crazy. It is, in some ways, a crap shoot -- what works, what doesn't, progression, resistance -- and the oncologists are kind of guessing, informed guesses, but they are not on solid ground, especially given all the individual differences in responses. You can see that Ff has been down many roads, and now she again seems to be on something that works, as did the initial treatment for a few years. Then trial and error until she got to Xeloda. So, be prepared. It is not a linear experience for most of us.
Thank you! I will have her ask her onc. I know when it spread this summer . They tested it and said it was still er positive or something like that. She told us she was her 2 low . We never knew that before unless we were just never told or it’s new? We are so confused on a lot at the moment . Sometimes I feel like they just us what they have to because they think we have no idea what’s going on otherwise . But I research everything as much as possible . But it’s a lot! Thanks so much for taking the time to reply it truly means a lot ❤️
Wait, it sounds like they did genomic testing last summer. That is good. Ask if you can see the report! I would.
HER2 low is a new thing, a new distinction. My oncologist still says I am HER2 negative, but actually, I know from the testing that I am HER2 low. They just began paying attention to that difference because there is a new treatment that works for HER2 low and HER2 + but not for negative. That is, what is new is the category of HER2 low. It probably is not a change in her cancer. It is really good that it is staying ER+. Also good that she got a few years on her first treatment.
It is natural, almost automatic, to develop resistance to the estrogen blockers. It is not clear if they were saying she developed resistance, or if her cancer is immune to estrogen blocking treatments. If they did test, maybe they discovered she is ESR1. I believe that means that none of the hormonal treatments will work, and that is why they are thinking Xeloda.
It is a lot of work to learn all this stuff, and you are doing that work. The missing piece is that the oncologist is not giving you enough information to understand her decisions. That is my opinion, what it sounds like to me. Some of us need to ask many questions and to understand. Few doctors appreciate that, but some actually do and breast oncologists should be used to it, because there are so many decisions to be made and there are few absolutes. There is new information all the time, new treatments....
hi Tammy. you are very knowledgeable. lots of good info that you shared👍....thank you! I do have one question for you. if it turns out that Flower's Mom does indeed have the ESR1 mutation....wouldn't that give her the option of taking the new oral SERD Orserdu....which I believe is a type of hormonal blocker. although I guess not a good option if she is resistant to hormone blockers. hmmmm?
also...she has only been on the Faslodex for 7 weeks. wouldn't it make sense to wait a bit longer to give it a chance to work. and the Afinitor. it seems premature for her onc to say she is resistant to hormone blockers.? maybe I am missing something?maybe 7 weeks is plenty of time? but what if what was in her lungs really was cancer and the Faslodex and Afinitor really did crush it? I'm sorry for subjecting you to my 'thinking out loud'...lol. I just thought that 7 weeks is a small amount of time in the 'mbc world' where treatment goes on for years🙏 (hopefully)
I do wish the best for Flower's Mom💛
and you too💜 and everyone here❤️
Of course, you are right about everything. I was confused about ESR1. Turns out that estrogen suppressors and targeted therapies are good treatments for it. And Oserdu if that doesn't work, or as an alternative.
And yes, 7 weeks is short.
Hi there! With breast cancer, it is indeed a lot to take in for most of us. There are many versions of breast cancer, and they all behave very differently from one another....and then add to that, they behave even more differently depending on the actual patient. It all seems like black magic and voodoo trying to decipher any of it. I was on Ibrance and Letrozole for 3 years. Within that three years (1 1/2 years of it to be exact), my cancer spread from bone only to my stomach and colon......and probably all sorts of other places as well. I was switched to Verzenio and Faslodex for 6 months.....while my markers just kept going up and up....it did not work! Just a side note, I have ER/PR+ lobular....which does not show up readily on scans so all my scans kept showing up as NED, but my markers were sky rocketing. I was then switched to Piqray.....and I turned out to be allergic to it so that /swas a no go within 9 days of starting. We tried Faslodex with Arimidex for an additional month to the 6 of the Verzenio/Faslodex with markers going up even higher. I requested an EDG/Colonoscopy and there it was, festering along gingerly (lobular loves to go to the ovaries, stomach, colon and peritoneal tissues), and none of the scans even hinted at it being there - quite profusely. I was then switched to Xeloda and my markers tanked from the 600's to none. None of the scans pick up on lobular....I was having FDG PETs, MRI's, and CT's....I even had an FES PET, all clear even though the cancer was there and quite large. I'm lucky that my markers do follow my cancer well, because if not, my doctor would have no way of knowing if it's being controlled. I had a second EDG/colonoscopy a few weeks ago (one year after the first and Xeloda for 9 months. My stomach had healed tremendously, even though cancer cells are still there on biopsy.....but it's working all be it slowly, getting better. I know this was a lot to read, but I hope this gives you some idea of how much medicine just does not know about how, when, or where breast cancer does what it does. Second opinions are always fantastic! I found my new oncologist with a second opinion, and she's been my doctor now for 4 1/2 years. I wish the best for you and your mom. I know how hard it is to be the daughter of a mom with breast cancer (my mom had it) and.....I know how hard it is to be the mom with breast cancer, I see how worried my daughters are all the time. Wishing you both peace, and health and the best outcomes possible, take care....
Great the xeloda is working for you. I read your profile how is your back pain now? Some of her Mets are in L2 and L3 . They want to do radiation treatment for that. And then she will see a spine doc for issues unrelated to cancer . Mostly aging and bulging disk. But hopefully the two can help. She has a lot of back pain.
hi Flower1513.
in thinking about your post...it occurred to me that your Mom's oncologist stating your mom's lung mets may have not been cancer after all, makes no sense to me? given in the context that your mom was diagnosed with mbc because of those very same tumors that are now gone. did I get that correct? didn't you say that up until this summer, the only area of mets was to the lungs? and then showed up in the bones and liver and brain(tiny) this summer? going on that assumption....maybe the Afinitor and Faslodex really did 'crush' the cancer in her lungs. and maybe your Mom needs to be on it longer than 7 weeks to know for sure whether it is working or not? and there are more types of hormone blockers than just AI's (aromatase inhibitors). as in the SERDS. which is what Faslodex is and it works by a different mechanism than AI's.
please also read my reply to TammyCross regarding the ESR1 mutation. the Foundation One test (called a liquid biopsy because they do a blood draw to use for tehsting) can give info regarding the status of her cancer and any possible mutations. I had the test and discovered that I did indeed have the ESR1 mutation and therefore I am a candidate to take the new oral SERD called Orserdu as a mono therapy.
hope I haven't added to your confusion. mbc is truly complicated.
honestly, I believe a second opinion is always a good idea. and in your Mom's case, I think it would be especially helpful.
you are doing a great job in supporting your Mom! wishing her the best possible outcome🙏.
carole💛
It was these 2 plus another one in the lung. All 3 are no longer seen. We followed all 3 markers for almost 3 years! And yes she is saying it may have not been cancer . We are seriously confused on this. We are diving into getting more info. But yes correct up untill July only chest nodes and lungs were involved. And now bones , liver, and small brain met which she had radiation for. Her tumor markers are not anything crazy…. like 300’s I mean I no super abnormal but compared to some others over the 1,000 but still . She doesn’t like to read everything so I basically look everything up and try to figure this out. Thank you so much for replying and for your thoughts . They are very much appreciated ❤️
Two pet scans cancer free 
Xeloda
Ibrance to IV chemo
Reliability of PET Scan/cancer antigen tests?
